Jerika Bolen scheduling her ventilator removal date

[princesa]

https://www.washingtonpost.com/news/...her-own-death/

Has anyone heard of this recent news of this 14 year old scheduling when she'll remove her tube as she has muscular atrophy and is in constant pain. If you have time please read the article, I would be interested in how fellow Christians view this. If Catholicity sees this I'd be interested in her response as well. This is really hurts the heart. Thank you.

[KingsGambit]

Cath says she'll get back to you on this later tonight (since I'm on the computer right now).

[Teallaura]

[princesa]

Thank you KG, I appreciate it.

[Catholicity]

https://www.washingtonpost.com/news/...her-own-death/

Has anyone heard of this recent news of this 14 year old scheduling when she'll remove her tube as she has muscular atrophy and is in constant pain. If you have time please read the article, I would be interested in how fellow Christians view this. If Catholicity sees this I'd be interested in her response as well. This is really hurts the heart. Thank you.

Realistically this is far from assisted suicide but falls into the line of of no longer taking "extraordinary measures" to prolong suffering. In hospice and terminally ill patients its actually seen Identical to a Do Not Rescucitate Order. At this point, comfort and pain medicines would be given to keep the patient out of pain as well as specific medicines to assist the patient from a high fluid build up that keeps the breathing more relaxed. Essentially its a combination of sedatives and keeping the mucous glands moisturized. It wold be the same as if someone with end of life cancer or lou gherig's declined antibiotics, ventilation, or a feeding tube in order to prevent the length of suffering that would be triggered by living longer. I don't see a problem given that the parent's consent to the 14 year old's wishes. This type of Muscular Dystrophy is excruciatingly painful, terminal and with 38 surgeries, no cure and unable to feed oneself the decision to end the measures which actually keep a person in extreme pain are ok Especially if they are in hospice already. The USCCB agrees that no extraordinry measures need be taken if end of life is emminent

[princesa]

https://alyssaksilva.com/page/2/http://www.makoa.org/vent/ventlife.htm"There was a lot of negative self-image stuff," she concedes. "I told myself, `I'm falling apart, I'm not worth anything.' And there's this unwillingness to adopt yet another piece of equipment in your life." But six years ago, she started using BiPAP ventilation at night.
"Once I did, I felt so much better. It's night and day. It's like being dead versus being living.
"Why live your life in a fog with a constant headache and always having nightmares and being nervous and jumpy when you don't have to? It's like taking aspirin for a headache -- if it's there, why not use it?"
Her advice to nasal mask users is to get a custom-fitted mask. "There's no way to get a good seal on a standard industrial mask -- I tried one at first, and it was horrible. But they have these custom-made masks, and I really don't understand why they're not used more often. It solved the problem completely. Why aren't they more popular?"
She does see a tracheostomy in her future. "I think it's inevitable. I don't think nearly as negatively about it as most people do. I have lots of friends who use some sort of noninvasive ventilation, and some are so insistent that they would rather wither and die than be trached. I would rather live. And I would rather live well. I know people who are living very successful and happy lives on trachs.
"We live with this negative stereotype about ventilators -- there's this image of people with multiple system failure at the end of their lives. That is absolutely not the way to look at it for someone with a chronic disability. It's a piece of technology that can help us live better."

How I wish Jerika could get a visit from this woman! Or Stephen Hawking.
I will pray for this beautiful little girl.